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Related Experiment Videos

Protecting subjects' interests in genetics research.

Jon F Merz1, David Magnus, Mildred K Cho

  • 1Center for Bioethics, University of Pennsylvania, 3401 Market Street, Suite 320, Philadelphia, PA 19104-3308, USA. merz@mail.med.upenn.edu

American Journal of Human Genetics
|March 1, 2002
PubMed
Summary

Biomedical research participants have diverse interests beyond altruism, especially with increasing commercialization. Current policies neglect these varied motivations, necessitating inclusive decision-making for research benefits and control.

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Area of Science:

  • Biomedical Ethics
  • Genetics Research
  • Commercialization in Science

Background:

  • Traditional view of research participation assumes altruism.
  • Patient advocacy groups increasingly influence genetics research.
  • Academic biomedical science has shifted towards commercialization due to policy changes.

Purpose of the Study:

  • To examine the diverse interests of biomedical research participants.
  • To identify ethical challenges arising from participant roles and commercial interests.
  • To evaluate current policies and practices regarding research participation.

Main Methods:

  • Analysis of participant interests in biomedical research.
  • Examination of ethical implications of commercialization in research.
Keywords:
Analytical ApproachBiomedical and Behavioral ResearchGenetics and Reproduction

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  • Review of existing policies and practices.

    • Main Results:

    • Research participants' interests extend beyond altruism.
    • Current policies inadequately address the diverse interests of research stakeholders.
    • Increased commercialization creates complex ethical dilemmas.

    Conclusions:

    • All research participants should have a voice in decisions about ownership, access, and use of commercialized products.
    • Researchers and institutions must proactively negotiate control and benefit-sharing before research commences.
    • Addressing diverse participant interests is crucial for ethical biomedical research.